Accepting Charity: Our Experience with the Make-a-Wish Foundation

My husband and I have three children, two of whom have a disease called Shwachman-Diamond Syndrome. Shwachman-Diamond Syndrome (SDS)is a rare, genetic bone marrow failure syndrome that can be life threatening.

Accepting that your child has a life threatening illness can be a struggle, one that lasts a lifetime. Accepting a wish from a wish granting organization like Make-A-Wish (MAW) can sometimes be scary because you are acknowledging that your child does indeed have a life-threatening illness -- something that we all want to forget. If you are a family like ours, you have medical bills stacked in every corner of the house, you spend hours each week talking to insurance companies and medical billing departments. It may seem as if you spend as much time in the doctor's offices as you do on the phone discussing the bills their visits bring about. Is this a reason to grant your child a wish? No, but it is a part of what Make-A-Wish is all about. They want the entire family to forget about doctors, hospitals and anything medical during the child's wish.

At first Chris and I felt guilty for allowing our children's wishes to be granted. Then we thought about several things. We have come to accept our lives as normal. In reality our lives are far from normal. Normal children have not been under anesthesia 10 times before they are 4 1/2 years old. Normal families do not celebrate the first time a cold DOESN'T turn into a bacterial infection. Normal families don't rejoice when their child learns to swallow the 14 or more capsules they have to take each day. We cannot look at our children and think of what they will be when they grow up without thinking about SDS. "Will they make it to be an adult?" always pops into our minds. Normal families don't wonder if the lab results are REALLY correct. I cannot tell you how many times I have stared at the lab results praying that the results were wrong. I am sure you have all done the same thing, if you have children with a life-threatening illness. My children play doctor, but not like other children. They draw blood from their stuffed animals (they pull back on the play needle like pros). They even know how to tie the rubber strip around the arm and tap to find the vein. We've had to tell them NOT to tie anything around their arms at home! Sean places IVs in his bear complete with splint and all. Joseph lines all of his animals up and gives them medicine. Sean no longer cries when he gets an IV, instead he tells the nurses, "When Joseph comes in here, he is going to cry, but you tell him that Seany said it doesn't hurt." Matthew is healthy, but even his life is affected. No one in the family escapes without being affected by this illness.

I spoke with Ann Jones from Make-A-Wish of Richmond and Western Virginia recently. She tells me that the vast majority of the wish children survive their illness. There are numerous children out there who are eligible for wishes that have not been referred to MAW. They have the capacity to grant more wishes, but it is a policy of Make-A-Wish not to solicit children for a wish. Ann says, "Many parents are afraid to refer their children because they think that we grant 'dying wishes' or 'last wishes.' This Myth is the biggest challenge that our foundation faces. We are currently trying to increase public awareness that we grant wishes to children with life threatening illnesses. While we do grant wishes to children with terminal illnesses, most of our children are survivors. By granting them a wish, we seek to give the child the opportunity to be a child again."

When Sean and Joseph went on their wish trips, MAW sent us a camera and a form for the boys to sign. The form included statements like, "I promise to forget about doctors, hospitals and anything medical" and "I promise to smile whenever I think about my wish." Our boys are still smiling from ear to ear! Whenever they get anything in the mail they ask, "Is this from the wish people?"

We have been blessed abundantly and this added to our feelings of guilt. I told Ann that we felt this way and she told us that first day she called, "Don't feel guilty, we grant wishes for the children no matter what you or your husband earn." Make-A-Wish can do things that we parents cannot! Sean would NEVER have met Steve from Blue's Clues without MAW! Sometimes we have to be humble and accept gifts from others. One day we will be able donate to make-A-Wish and help make another child's wish come true.